TAGSEdwina WrennExomphalossurvivors Linkedin EDWINA WRENN is twenty six years old and the proud mother of two fabulous children.But when she was born, the young mother from Limerick’s Father Russell Road weighed a little more than three pounds. Her liver and intestines were outside her body and doctors told her parents there was little chance she would make.Her condition, known as Exomphalos Major, is one which requires extensive surgery and many babies born with it do not survive.Sign up for the weekly Limerick Post newsletter Sign Up But Edwina, who talks to and supports people who have survived the condition, wants worried parents to know that there can be a happy outcome and their children can go on live normal lives.“Exomphalos is also known as Omphalocele and January 31 is Exomphalos / Omphalocele awareness day when I want to get exposure for the Facebook support group I set up for parents of children born with Exomphalos and for adult survivors.“I want to spread awareness for Exomphalos so parents and other survivor’s don’t feel alone and can talk to people who understand how they feel.“As a survivor, I’ve gone on to get married and have two children which to some people seems not important but to parents of Exomphalos babies it is massive.“Not knowing what the future brings is very hard. I’ve spoken to many of these parents and it’s lovely to see them a bit more relaxed knowing that there is hope that there little ones will have a normal life “. Edwina has been a face of hope for hundreds, if not thousands, of families because “there are no more than 100 of us Omphalocele adult survivors active on our support group from around the world,” she said.Edwina is in a worldwide group that mostly has members from America and adds that “there is no real support for parents or adult survivors in Ireland and I’m hoping to change that”.Edwina’s support group can be reached at https://www.facebook.com/ExomphalosOmphaloceleAwareness/?ref=bookmarks Advertisement NewsHope for ExomphalosBy Bernie English – February 1, 2016 1194 Twitter Email Print WhatsApp Facebook Previous articleRugby – Zebo to stay at Munster for two more yearsNext article€21,000 of Benzodiazepines seized in Limerick Bernie Englishhttp://www.limerickpost.ieBernie English has been working as a journalist in national and local media for more than thirty years. She worked as a staff journalist with the Irish Press and Evening Press before moving to Clare. She has worked as a freelance for all of the national newspaper titles and a staff journalist in Limerick, helping to launch the Limerick edition of The Evening Echo. Bernie was involved in the launch of The Clare People where she was responsible for business and industry news.